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12 months post Op and still struggling with ED

User
Posted 08 Nov 2019 at 11:00

I bought the expensive pump due to the reluctance of my GP. It works great at getting the thing up but it then immediately collapses on release of the pressure. Tried adding the rings that come with it but that seems to remove sensation (probably due to strangulation!!) and it all seems a bit mechanical and removes much of the desire. My Prof seems bemused that 6 months after nerve-sparing surgery I still have no response to any chemicals outside a bad headache but it seems on here most people are lucky if they get a response within that timeframe.

Just seems that I have seen no change since the op at all - so what is the mechanism that suddenly makes it all spring into action if the nerves are spared (is my question!)?

M

User
Posted 08 Nov 2019 at 11:08
Mark , constant use of the pump to keep him healthy. Yeh not great for sex but does the job in the meantime. At your stage I was trying everything and getting very despondent. I used injections before I fought to get daily Cialis which was and still is my savior completely. The caverject only half worked and pain like i never knew afterwards. I bought Invicorp injections privately and they were amazing. I’m not sure what your situation is but for tablets to work , you really need a positive partner with stimulation etc. I still can’t really masturbate unless I use the pump , but with my wife everything is A1.

Takes time mate. Don’t give up and try everything. Remember not to mix drugs and get GP advice before trying stuff.

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 12:13

Thanks Chris - really appreciate once again the reply! Sometimes I think half the battle is in the sharing! interesting you had such a different response to the different injections...I was thinking of trying one or maybe the suppository?!?

Cialis gives me a bad headache or I would be fine to take it...unfortunately!

 

M

User
Posted 08 Nov 2019 at 12:19
Ok so with low dose 5mg daily Cialis there are very little side effects if taken at night. Started working in a week. I funded myself initially to trial it and bought cheap online. Alprosatadil is the drug that can be injected ( Caverject ) or put in the penis urethra ( Muse pellets or Vitaros cream ). Sort of worked but not for me. Invicorp is a different injection which has worked on 77% of people where all else has failed. I bought that privately too but was around £25 per pop

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 13:25

Ah ok - so 5mg at night - that could be a plan! I will talk to GP and maybe give that a go as the full dose is where I get the problems! thanks Chris :-)

User
Posted 08 Nov 2019 at 15:09
Mark

Like Chris says don't give up and keep pumping, atrophy is mostly irreversible.

I am over 2.5 years post op 50% nerve sparing, a long way off yet but the most recent improvements have been the most noticeable.

Good luck

Cheers

Bill

User
Posted 08 Nov 2019 at 18:45

Are all these pumps manual? Any more automated or connected options out there? It’s a journey I suspect I will be on post op.

User
Posted 08 Nov 2019 at 19:29
You can get automated /battery ones but simply no need !! Only takes a few pumps tbh. Try to get a one handed one like the somaerect or you are messing around with tubes and both hands which is awkward

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 19:36

Cool thanks for the heads up. Not the best term I guess. I would imagine it’s kinda like going the the gym. Just about increasing blood flow and exercising muscles to train it. Blood flow key to repair etc. I am 52 and still have good function pre op without any symptoms of ED. Apparently function pre assuming nerve sparing is possible is related to post op outcome?

User
Posted 08 Nov 2019 at 20:53
I don’t think erectile dysfunction post op is less likely in men that had good pre-op function although obviously a man who already had ED is not going to see a dramatic improvement after RP. It all comes down to how much of the nerve bundles can be saved, how battered / burnt / bruised they are during the op and a bit of luck. Some men have total nerve sparing but the temporary damage basically leads the nerve bundles to pack up and retire permanently. Other men have significant nerve removal or major incidental damage and yet a small amount of nerve is able to regenerate. In more cases, the man regains physical ability to get an erection (sooner or later) but the emotional impact of diagnosis, cancer treatment, worries about the future, fear of failure and questioning what it all means for their sense of maleness cause ED.

In our house, we are in the third camp.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2019 at 21:02

Hey Lyn

Yes, that makes a lot of sense. So many factors involved along with our old nemesis psychosomatic influences. Experiences a minor amount of this in terms of inflammation and bruising post TPM biopsy. 

I hope things progress positively in your house. It’s one hell on a journey for sure. Spoken to two close friends tonight and both around my age and just starting the journey having had elevated PSA so moving the mpMRI.

 
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